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Janalen and Rocky: Prader-Willis Syndrome, Cystic Fibrosis, Adoption, and Down Syndrome

Janalen and Rocky: Prader-Willis Syndrome, Cystic Fibrosis, Adoption, and Down Syndrome

Rocky admits that at first he had worries and concerns about raising a child with special needs, but these concerns quickly dissolved. He tells us “The joy that comes when you sacrifice for other people and other things…It helps you to focus on the things that really matter in this life and to take joy in the simple things that we often take for granted.”

Stories

Shirlene: Down Syndrome

Shirlene: Down Syndrome

Jim is 51 years old and has Down syndrome.  He lives with his mom Shirlene who at the time of his diagnosis had never met anyone with Down syndrome.  At first, she was devastated. She now knows how grateful she is that Jim came into her life. Loving Your...

Beth and Bryce: Angelman Syndrome

Beth and Bryce: Angelman Syndrome

It took almost three years to get an official diagnosis for their son, Smith.  Beth and Bryce shared their journey to getting a diagnosis of Angelman syndrome and how it has impacted their family. Making Your Heart Grow Long Journey Towards a Diagnosis Unlike several...

Christine: Autism

Christine: Autism

Christine knew there was something different about her oldest daughter Skylynn.  They first hoped she had a sensory processing disorder. However, at the age of two Skylynn was diagnosed with autism.  Christine has spent every day since her diagnosis...

Phyllis and Keven: Polymicrogyria

Phyllis and Keven: Polymicrogyria

When Laura wasn’t meeting developmental milestones, Keven and Phyllis brought her their pediatrician.  They were shocked to learn that she had polymicrogyria. Over the years they realized what  an absolute joy to Laura was to have in their...

Jen and John: Encephalocele

Jen and John: Encephalocele

Jen and John were encouraged by medical professionals to abort Jackson after he was diagnosed with encephalocele.  They chose to carry him to term and thrilled they did. Jackson is now a thriving two year old who is proving doctors don't always know best. ...

Camille and Martin: Seizure Disorder

Camille and Martin: Seizure Disorder

Martin and Camille have four children.  Three of which have a seizure disorder. Camille and Martin were pioneers in getting appropriate services for their children.  Camille and Martin were candid about first learning about their children’s seizure disorder...

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